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Our family had no idea what changes lay ahead when we got Willow's diagnosis at the age of 2 1/2 months. Or again when her first shunt was placed at 4 months of age. What about the next 12 calendar months that took us from 1 surgery to the next? We had no idea - what we did know is that we had avoided the 'traditional stories' of being told to abort our child since she wasn't diagnosed in utero, or the 'commit her into a home'. Instead we were told she was born without a brain and there was nothing they could do.
Fast forward 5 years and she is an amazing, crazy, fun loving, joy to our family that has endured 14 brain surgeries, 3 tubes in her ears surgeries, tear duct surgery and many, many, pokes for blood draws, IV's, etc.
This is why we walk. We walk to share her story, we walk to raise awareness of this condition and funds for research. This life long, never ending, will always have to have another surgery because its a machine in her head (and we al…